Urogynecological Health and Self-Advocacy

I can distinctly remember a time when I felt that all hope was gone and that nobody understood what I was experiencing with my urogynecological health. If I can help even just one person feel heard, or empathize with someone who might be feeling the things I feel or felt, I know that past Sarah would be proud of future Sarah. 

Living with chronic UTI, vaginal infections, and interstitial cystitis is hard to explain because the magnitude of the emotions paired with the unpredictability of the emotions is overwhelming. Some days I’d feel positive, strong, hopeful, and confident. Other days, most often right after the so-called “good days,” I felt like I was living outside of my body because I was so terrified and tortured to be experiencing what was inside of it. The word “lonely” took on a new definition for me. If you haven’t been through, I think it’s hard to understand just how much urogynecological health impacts your life overall.

The pain is one aspect, but then there’s the grappling with the lifestyle changes and complications that accompany chronic infection. How can I possibly date like a normal 25, 26, or 27-year-old when I’m mortified about the fact that I can barely walk on the days I have a flare-up, let alone engage in any sort of sexual connection?

My complicated story starts here, but I can assure you, it has a happier ending– one that might give hope to others who are going through what I did.

My First Infection Was A Walk In The Park

The UTIs and chronic pain that I experienced in my mid to late 20s were debilitating. But ironically enough, my first UTI was a walk in the park. I remember being 20, in college, and casually dating a guy. I started getting a burning sensation every time I had to pee and even when I didn’t have to. My roommates assured me it was just a UTI and told me to go to the university’s health clinic for a urine test. Sure enough, it was a UTI. 

Oddly, what I remember more than any pain, which was mostly just annoying, was the shame and embarrassment I felt when I thought of telling the guy I was seeing. But I told him anyway. He was great about it, and I took my course of what I would imagine was a 7-day antibiotic. The symptoms were gone after a couple of days of taking the pills, and that was that. I thought to myself, “Wow! Glad that’s over. Now I can say I’ve had a UTI, like some rite of passage into womanhood.” 

Little did I know that minor UTI was a breeze compared to what I would face years later.

Four Years of Respite

For about four years after that first UTI, my urogynecological health gave me no grief. I had a long term boyfriend (who was different from the aforementioned dude above) and was living out my early 20’s the way I thought everyone did: binge drinking on the weekends with friends, fearing Mondays, cranking it out during the week at my 9-5 job, working out to look skinny and fit at the same time (how did I think that was possible?) Rinse and repeat. 

I moved to Nashville, then back to the Bay Area, which is when my boyfriend at the time and I broke up. I then started dating someone new whom I worked with. A few months into dating this new guy, I remember driving to work one morning and having a sharp pain in my lower pelvic region. I’d describe it as a low-grade burning paired with a distinct jabbing sensation in my bladder. Eventually, the pain radiated up my entire abdomen, throughout my perineal area, and down my upper thighs. 

I didn’t think much of it until I finally made an appointment with a women’s health nurse practitioner (NP) at Stanford Health to get some urogynecological tests done. This was about the time I started to categorize my life into “before” and “after” that appointment.

The Doctor’s Visit That Began My UTI Journey

I walked into that appointment thinking it might just be a bad STI, or UTI, or something else easily fixable. Up until then, that had been my experience of urogynecological health issues. During the pelvic exam I was given, there was an extreme amount of discharge that literally fell onto the floor when the NP inserted a speculum. At first, the NP thought it might just be a UTI, so she prescribed me a course of antibiotics and sent me on my way. 

By the time I got home, I had a voicemail on my phone from the clinic saying this NP had changed her mind and believed I had pelvic inflammatory disease (PID). I was terrified and extremely confused. They had me come back into the clinic that day for a shot of antibiotics in my butt cheek (a fun new experience I never thought I’d get to have in my 20s!) and a stronger course of antibiotics to take for a week. I was given a doctor’s note and advised to take time away from work to rest. 

Building Fear and Worsening Symptoms

In the coming weeks, my symptoms were not only worse but borderline unbearable. It felt like someone had injected my bladder and lower pelvic area with acid or fire ants—maybe both. I had no strength, no appetite, and could hardly get out of bed for days. 

Fear was building, and I remember thinking this was the end of my womanhood as I knew it. The pessimistic voice in my head told me I’d have to get some organs removed, lose my fertility, and that I would never find someone who would love me with all these medical problems. 

By the second week of increasingly worse symptoms, my mom had an intervention with me and begged me to go to the emergency room (ER). I felt like I was living in a bad dream, one where you know the ending is far from near. In the ER, as I gave a urine sample, I was surprised to see that my urine was now a shade of amber. “Isn’t the cocktail of medication I’m on supposed to be making me better, not worse?” I thought to myself.

As the ER doctor walked into my room with results, I expected her to be empathetic and armed with a diagnosis that would solve all the mystery problems at hand. What she actually did was tell me she had no idea what was wrong, but assumed it was a gnarly UTI that needed more antibiotics, paired with an antifungal to prevent a yeast infection. This was when I learned how interwoven vaginal microbiomes are to the antibiotics we pump through our veins, which was a steep learning curve, to say the least. It turns out that solving a urogynecological health mystery often isn’t straightforward.

I was sent away with a new antibiotic prescription, as well as an antifungal, pain medication (I believe it was a heavy dosage of Advil), and no answers.

The Hardest Years Made Me My Own Advocate

The months and years following these initial appointments were some of the hardest of my 20s.

Over the next couple of years, I worked with a multitude of different doctors across different medical practices. Urologists at UCSF, various women’s health clinics, urogynecological centers, private lab testings, etc. There was a LOT of testing—urine samples, vaginal swabs, bloodwork, scans, a cystoscopy, x-rays… the list goes on. I even tried going down the rabbit hole of juicing 24 oz of fruits and veggies every morning to try and “clear out” any bad stuff inside my body, but what I got instead were digestive issues and time and money lost.

I found a lot of dead ends with doctors and eventually had to become my own advocate in many ways. I researched treatments, medicine, and procedures, and brought a list of information to the doctors, who, most of the time, hadn’t heard of my research or weren’t willing to do what I wanted. I tried a ton of different antibiotics and antifungals. I had asked about more advanced urine tests, but doctors wouldn’t or couldn’t help me with that. 

So I had to take matters into my own hands. Fortunately, Live UTI Free had resources online that I was able to use, and I found a company that let me do an advanced UTI testing panel that didn’t require me to get a doctor’s sign-off.

The most frustrating moment was when a doctor, after YEARS of trying out random antibiotics and medicines that wreaked havoc on my body, told me that I had been given the incorrect antibiotics for the strain of bacteria that was causing my UTI. Why did no other doctors test me with a wider panel to see what I actually needed???

Exhausting Procedures

All of the dead ends and knockbacks greatly impacted my quality of life. It was beyond frustrating because women’s urogynecological health is not talked about enough, nor is its research funded as much as other illnesses. I was so exhausted all the time trying to play Nancy Drew with my issues, and no one seemed to care that much besides me.

My doctor’s medical notes read like a grocery list…: “Various tests and investigations have been done throughout the last few weeks to try to eliminate and get to the bottom of the cause of her pain…

• Blood test results are normal
• Urine specimen no growth
• Abdominal ultrasound – no focal pathology
• Transvaginal ultrasound showed the Mirena coil correctly inserted
• The urinary bladder and pelvic ureters are normal
• No evidence of deep endometriosis
• No evidence of Hydronephrosis
• The STI screen did not show Chlamydia, Neisseria, gonorrhoea, Mycoplasma, Ureaplasma, Trichomonas, Gardnerella, or Herpes
• Follow-up swab did not show any trichomonas, yeasts, or bacterial vaginosis
• Streptococcus agalactiae was found, but it is only of significance if the patient is pregnant
• Urine culture showed a Klebsiella pneumoniae with between 10 and 100,000 bacteria/ml sensitive to trimethoprim, norfloxacin, co-amoxiclav, ciprofloxacin, and cephalexin
• Follow-up bloods are essentially normal apart from a slightly elevated haemoglobin, red blood count, and white cell count…

As of today, she is still experiencing some urinary and vaginal symptoms including frequency, and some pain at the beginning and the end of urination. I feel that more tests are indicated to try to see what the underlying cause of these issues is, and she possibly needs to have a repeat cystoscopy.”

Cystoscopy. OUCH!

The procedures exhausted me, emotionally and physically. I had to shut off parts of myself to endure the constant probing and poking. Yet it also challenged me to be extremely vulnerable all the time with strangers. This was not easy at first.

What Made A Difference with my Urogynecological Health

Today, I’m almost three years UTI and yeast infection free! I never thought I’d be able to say that. I still experience some minor symptoms flare-ups around my menstrual cycle, but they’re extremely manageable and far from the debilitating ones I had in the past.

Things that made a difference during my experience: 

• Live UTI Free, which was enormously useful.
• My mom. When I lived at home and everything started happening, she was a caretaker in many ways. 
• Innovative Wellness and John Muir PT staff. They were the first providers who really made me feel seen and heard. They didn’t brush me off.
• My current therapist.
• My dog.
• My former manager at work. She was super empathetic to my situation.

What made the biggest impact in my life:

• The lab that showed the strain of bacteria causing my UTI.
• Pelvic floor physical therapy. If you’re even slightly considering it, do it.
• PTNS or percutaneous tibial nerve stimulation.
• Lexapro and therapy.
• Probiotics and natural supplements. D-Mannose for prevention, aloe vera, CystoProtek, and pumpkin seed oil.
• Boric acid vaginal suppositories when needed.
• A slow and restful recovery. Less is more.

Chronic illness deeply impacted my life. I had constant depression and anxiety, as well as severe panic attacks. My struggle with UTIs gave me insomnia and body dysmorphia.

What I Learned

Here are some of the core consistencies in my life that have improved my health, both mentally and physically, and helped keep me free of infections:

• Healthy diet, almost fully plant-based, and always whole foods.
• Cutting WAY back on alcohol consumption. I’ve experienced major improvements both mentally and physically because I’ve reassessed my relationship with alcohol.
• Yoga. An incredible practice that accommodates any and all body types, even during our worst flare-ups. I recently became a teacher myself!
• Figuring out my gut health. Strong emphasis on taking probiotics (women’s health strains) every day. I also started taking digestive enzymes to aid further in gut health (which, as we know, has a major effect on our bladders and reproductive organs!).  
• Consistent therapy and Lexapro. A winning combo that has changed my life.
• Deep self-work to heal traumas and learning to accept myself at face value. No more trying to please people and live up to the expectations of others (especially men!). This has allowed me to love myself and live authentically despite my medical history and sensitivities.
• Sleep hygiene. If nothing else, investing in a sleep routine makes sense because this is where so much of our body’s healing takes place. For me, magnesium, essential oils, and a heating pad have gone a long way!
• Continuously practicing my pelvic floor physical therapy exercises and relaxation methods.
• Prioritizing simplicity in life. Hobbies and nature can help us find purpose in ourselves when we’ve spent so long feeling lost and in the shadows of our UTI struggles.
• Investing in relationships with people who show up for you on both those good and bad days that I mentioned at the beginning of this story. The ups and downs still happen, but finding a community and support system to help you during those dark moments is so crucial. Reddit and Live UTI Free have been helpful places for me.

My story was both unique and unfortunately common. I was seemingly doing all the “right things” that the medical industry tells us to do, and nothing worked or changed for years. If I could tell people going through a similar journey one thing, it would be that you aren’t alone and that, sadly, this process can take YEARS. Everyone’s body is so different. Sometimes, it’s about doing less rather than more, and a lot of the time, it’s about being your own best advocate.